New Charter of Rights for People with Dementia can be used to complement existing Bill of Rights in LTC homes

Mary Schulz, the Alzheimer Society of Canada’s director of education.

Understanding the new charter can help LTC homes enhance quality of life for people with dementia, says the Alzheimer Society’s Mary Schulz

While Ontario long-term-care home residents have a Bill of Rights, the Alzheimer Society of Canada has launched the Charter of Rights for People with Dementia which was created by an advisory group of people with dementia. The charter can be used by homes to complement the existing rights residents have while creating an understanding of the “unique rights” of persons with dementia, says Mary Schulz.

In an interview with The OMNIway, Schulz, the Alzheimer Society’s education director, says the charter, which was launched Sept. 5, can help enhance the quality of life for people living with dementia.

Because there is a stigma attached to dementia, people sometimes do not understand the different rights that people with dementia have, Schulz says.

People with dementia may enjoy activities that have potential risks involved, such as woodworking or cooking. Family members or caregivers believing they are acting in the best interest of a person with dementia may deny a person their right to participate in a woodworking program, for example, because of the risk involved.

But Schulz says there are ways around this that allow the person to participate in such an activity and do so with minimal to no risk.

“What about working one-on-one with somebody? What about (in a long-term care home) a volunteer being able to stand with them, or modifying the program so it isn’t always about working with tools,” she says.

“We want people to pause and think about things that might otherwise be taken for granted.”

Schulz notes that people working in long-term care communities already have extensive knowledge about Alzheimer’s disease and related dementia. Knowing and understanding the points laid out in the Charter of Rights for People with Dementia can help them in their day-to-day work, Schulz says.

These are the seven points of the charter:

– To be free from discrimination of any kind
– To benefit from all of Canada’s civic and legal rights
– To participate in developing and implementing policies that affect their life
– To access support and opportunities to live as independent and engaged citizens in their community
– To be informed and supported so they can fully participate in decisions affecting their care and life, from the point of diagnosis to palliative and end-of-life care
– To expect that professionals involved in all aspects of their care are trained in dementia and human rights and are accountable to uphold these rights
– To access effective complaint and appeal procedures when their rights are not protected or respected

The charter, she adds, is to help people better understand the options that people living with Alzheimer’s disease and dementia have and how to support them to help people make informed decisions.

Schulz says the Alzheimer Society is also hoping long-term care homes spread the word about the charter.

“We are hoping they will let the (long-term care) residents and families know about the charter, and we are also hoping that people will tell us what they think,” she says.

“We would love to hear the reactions of residents’ councils and families, but we would also love to hear from people who are living with dementia themselves … because that will keep the conversation going.”

Click here for more information about the charter.

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